Thursday, January 22, 2009

Update

The care conference went pretty well today. We don't have any more answers, but we have a better plan. Keegan will have a capsule endoscopy tomorrow. If he were an adult, he would swallow a capsule with a tiny camera in it that will travel all the way through his GI system, taking pictures along the way. Since he can't swallow a pill, he will be placed under general anesthesia, and the GI doctor will drop the capsule past his stomach using the endoscope. Keegan should pass the capsule in about 4 hours, and then it will take a day or two to interpret the results. We are mainly looking for a source of the chronic inflammation Keegan seems to be having. I'll explain more once we have the results. The next step will be a surgical procedure early next week. Keegan will go to the OR to have a G-button (feeding tube directly into his stomach) put in, a liver biopsy, and a second bone marrow aspirate and biopsy. The G-button is a fairly simple procedure and the liver biopsy will be done laparoscopically. We do not have an actual day for this procedure yet. We have to get the results of capsule endoscopy before we do the surgery. We continue to await follow-up immunology bloodwork and repeats of some of the other GI bloodwork that cannot be done until tomorrow.

Keegan will be getting a very large amount of blood this evening. His counts have dropped into the transfusion levels, and he will need to be "tanked up" before anesthesia. It's not the most he's ever had, but we'll be running it over a shorter time to avoid shorting him on any of his TPN. Please pray that Keegan handles the volume well. The GCSF has finally kicked in to the point that we have reduced his dosage back to what he used to get, but we will remain on daily injections for at least a few weeks to see how he responds. Also, we were wrong about the 7-day course of antibiotics. Hem/onc asked for it to be extended for 14 days considering Keegan's low defenses, the severity of the infection, and the fact that he has had 2 in the last two months.

For now, please continue to pray for guidance for Keegan's doctors, answers from the upcoming tests, and strength for Keegan as he faces these battles. I so wish that I could put into words how much your support and prayers mean to us. I have heard many stories lately of Keegan's story touching lives way beyond what we thought was possible, and it truly is a reminder that God's work is not merely in our own individual lives but in weaving together the souls of many to magnify His name. While I pray for answers, comfort, and healing for Keegan, I can also offer up my burdens knowing that He has a plan for each us that extends beyond our simple lives on this earth. God may have given us free will, but He guides us together in a magnificent way back to His Son. We are blessed to know how our Lord is using Keegan is making a difference in the lives of others.